Author Topic: Have I done the right thing  (Read 3415 times)

kim warren

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Have I done the right thing
« on: September 26, 2005, 02:09:29 am »
Hi Everyone

I have just spent my weekend doing a lot of thinking  :-\. I have an appointment at Bartholemews Hospital in london in the oncology (eye) clinic.  Recently my local hospital has discovered some kind of lump behind my right eye.  Apparantley it has nothing to do with my AN but they don't know what it is, that's why they are sending me to London.  My appointment was for 21 October 2005, but after a lot of thinking at the weekend I have decided to cancel it, and that is what I have done  :-\

The reason being, I have had such a lot done over the last 5 years: Gamma Knife, Hydracephalus which meant having surgery, the tumour removed, a urine infection which put me in hospital and on top of that I have had my kidney removed.  So I have had a gut full of hospitals.  When I cancelled it I felt a huge relief, I have just got to break the news to my other half now, I'm sure he will understand.  I'm sure if I get worried in the future I will be able to make another appointment, but in the meantime I am going to enjoy the rest of this year and have a damn good christmas.. Kim

GM

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Re: Have I done the right thing
« Reply #1 on: September 26, 2005, 04:49:10 am »
Kim,

I fully understand your frustration with the hospitals and how you would like some normalcy (at least a month or so :), in your life).    But, you probably should reconsider rescheduling the eye appointment.  The relief you felt probably wasn’t the “I made the right decision� kind of relief…it was probably just “relief from another doctor visit� type of relief. 

To leave what ever they found alone could result in a much more serious result later with even more time sitting in the doc office reading 3 year old magazines.  Worse yet, permanent eye damage.  The decision is ultimately yours, but as an extended cyber family member, I'm would suggest that you reschedule the appointment.

Gary

« Last Edit: September 26, 2005, 08:21:12 am by GM »
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

jw

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Re: Have I done the right thing
« Reply #2 on: September 26, 2005, 10:55:02 am »
Hi, Kim.

I think that your message post "Have I done the right thing" indicates that you have some doubts.  You certainly have been through quite a bit in the past few years.  BUT, you have come through everything ok, and were able to put it all behind you.  Certainly, it hasn't been easy (and I'm saying this without ANY concept of how difficult it HAS been for you), but you faced each problem head-on and continued until the end.

I can appreciate what you are thinking right now (again, without ANY concept of what you ARE thinking, but just trying to imagine myself in your position), just wanting a rest from medical problems and looking for just one time when everything is "normal" without a worry.  Wouldn't it be wonderful if you could go through Christmas without doctor appointments, surgery, treatments, etc. and sit back and relax and enjoy a WELL-EARNED celebration???  You have more than earned this!!!  :)

However, if you kow that you have something behind your eye, and you postpone your appointment until the new year, are you really going to be able to enjoy Christmas?  Or will you, in the back of your mind, keep thinking about it and wondering what you will have to go through in the New Year?

You must be worried about this, and with everything you've come through, how could you not be worried?  It might turn out to be something fairly minor that will go away on its own or perhaps need minimal treatment?  Of course, you're worried about treament, surgery, etc. etc. etc. 

For whatever reason, you've had to go through these difficult times and you HAVE, and done pretty well with them by the sounds of things.  You can't stop now.  You've come much to far to let another obstacle slow you down.  If it is a minor something-or-other, then you'll feel tremendous relief in knowing that.  If it is more serious (and I certainly hope it isn't), then you will at least know that you are dealing with it and going to make it better.  Life has given you another test, you can't opt out of it.  It will make everything you've done so far meaningless.

My advice to you is rebook the appointment and look after your health.  It must have been a relief to you when you cancelled the appointment, knowing you wouldn't have to go through tests, appointments and treatments in the near future.  However, I think the satisfaction you're getting in the short-term will give way to much more stress in the long-term.

Whatever you decide, I'm sure that you'll get support from everyone here.  And it must be a difficult time for you.  Perhaps life it giving you all of these problems right now, so that you can enjoy the rest of your life after this, and have dozens and dozens of peaceful, happy Christmases after this is all over.

Keep strong!  My prayers are with you.

John
Diagnosed 31 Oct 2005
Bilateral 0 cm ANs.

matti

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Re: Have I done the right thing
« Reply #3 on: September 26, 2005, 12:16:58 pm »
Kim,

I can totally understand how you are feeling right now, but I whole heartily agree with John, Jennifer and Gary. Between my husband and I, over the past 8 years we have both been through very serious/life threatening medical conditions. I know that feeling of not wanting anymore doctor visits, tests or anything to do with the medical profession, BUT it is because of them that we are both here today.

From all that you have been through you are incredibly strong and you know that you will handle this with the same courage and strength you showed before. I get the feeling from the way you worded your post "Have I done the right thing", that you are not 100% in favor of your decision.

Please reconsider, as I believe the best possible Chrismas gift you could give yourself and your husband, is a healthy you. I am keeping you in my thoughts and prayers.

matti



3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
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kim warren

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Re: Have I done the right thing
« Reply #4 on: September 27, 2005, 02:56:31 am »
Hi Everyone

Thankyou to you all for replying to my post.  I did go ahead and cancel, but have been onto Bartholomews and the appointment has now been post-poned until February.  If I feel ill in the meantime which I don't at the moment if I hadn't gone to optician about the flashing I keep experiencing which has nothing to do with this lump then I would be none the wiser that the thing was there.

I am still wodering if I have done the right thing, but not meaning to put anyone off of surgery I did find it very traumatic as would anyone.  I had complications after surgery and things were pretty grim for me.  I know people go through far worse and I try to look back on it positively.  It wasn't the surgery that is putting me off, it is the fact I was so dependant on other people even if I wanted to sit up in bed I had to ask for help, I found talking very difficult and I was unable to sign my own name for approx 3 months.  I won't go into too much detail but my experience wasn't really a good one, though I am extremely grateful for what has been done.

I have also had some moles removed and I have to go to GWH hospital for the results of those in October, I just need a rest from it all for a while.

Thanks again for all your postings it means a lot, it is comforting to talk to people who know exactly where I'm coming from.  Thanks again  Kim :)

SURI

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Re: Have I done the right thing
« Reply #5 on: September 28, 2005, 10:23:01 am »
YES.  YOU NEED A BREAK.  I RECKON,  YOUR FAMILY DOES AS WELL.  MY KIDS ARE THE SAME AGES.  MY AN WAS
ALSO LARGE AND FAST GROWING.  MY EXPERIENCE WITH DOCTORS AND HOSPITALS  HAS BEEN VERY DISAPPOINTING.
I'VE HAD TWO CRANIOTOMIES AND A FAILED RADIATION TREATMENT IN BETWEEN.  I AM  EXTREMELY
RELUCTANT TO GO THROUGH ANY MORE AND MY HUSBAND AGREES, TOTALLY.  DOCTORS PROGNOSIS AND PREDICTIONS ARE JUST THAT;  EDUCATED GUESSES.  IT TAKES A LOT OF ENORMOUS EFFORT TO GET A GRIP ON YOUR
LIFE.  WHEN IT COMES DOWN TO IT, YOU DO WHAT YOU HAVE TO DO.  GOOD LUCK AND HAVE A GOOD HOLIDAY. 

wind6

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Re: Have I done the right thing
« Reply #6 on: September 28, 2005, 11:22:53 am »
Kim,
 Just wanted to say my thoughts are with you and that I understand what you are saying. I wish you and yours the best and most peacefilled holidays ever.  Sherry :-*
2.5cm x 3.1cm facial nerve neuroma
removed 8-2-2005(retrosigmoid)
St.Johns Hospital-Springfield,Illinois
Dr.Michael McIlhany and Dr.Carol Bauer
Wait n' watch mode for 8 years.
Gamma Knife at Northwestern Memorial Hospital. Chicago,IL. Dr. James P. Chandler. July 10, 2013.

wanderer

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Re: Have I done the right thing
« Reply #7 on: September 28, 2005, 11:33:23 am »
I hope it works out for you.   I had a friend in college that died rather suddenly from a cancer behind the eye.   He never really noticed anything until one day his eye looked a bit buggy.   He decided to drive home from college for the weekend and on his way his eye popped out.    He was taken to the hospital and by diagnosed with cancer.  unfortunately he died from this within a few months.


While I completely understand the desire to put off more surgery.   I have had 5 this year already.    Putting off your appointment can lead to very serious consequences such as blindness, or worse.    Sometimes by the time you feel ill effects it can be too late.